Book Cover Design FURTHER ALONG

Just to give you a taste of my book, this cover gives you a feel. The professional artwork was done by our son, Stephen, who is a full time Visual Designer. Content wise, you will have the chance to read about my near death experience with a breathing emergency that resulted in my trach and feeding tubes, permanently implanted. Also, I describe my time as a patient in a nursing home and what that was like. I talk about overcoming difficulties and how to face trials with determination, love of family and friends and the hope that comes from faith. It should be available in softback, hardback and e-reader form in the next several weeks.

FURTHER ALONG with Atypical Parkinsonism - the Book

 A little update on the book:  The title will be FURTHER ALONG with Atypical Parkinsonism, a slightly different spelling and grammar of the the word "Farther", which I liked.  It will be more correct this way.  The book will talk about my experiences with Deep Brain Stimulation surgery, my near death breathing emergency which resulted in a tracheostomy and feeding tube, some early difficulty with a couple of specialists who weren't helpful, some great doctors who were the overriding majority of great care I received, and some inspiration on the road to dealing with a fatal illness.  

We do have a draft of a cover that I want to share, to get the excitement rolling.  We are looking at a late summer or early fall roll out.  -- Dan

The home owner's association helped us by removing a beautiful shade tree that was sending roots under our house after 47 years.  I got out for some sunshine with Karrie and she snapped this on her iPhone.

 

Book to be Completed in August - FARTHER ALONG

 I have a publisher in place for our new book: Palmetto Publishing.  I have submitted the complete draft of the book.  We are working on the details and it is exciting to see it come together.  Karrie has done some extensive editing and advisement on the details of the accounts I have written in the book. Our sons, Mark, Stephen and Daniel are involved.  Daniel is writing the preface for me.  Stephen is designing the cover, while Mark is drawing two illustrations for the interior.  It is looking really good!  

The name has changed, Farther Along With Atypical Parkinsonism is likely the final title.  

Included will be all new writing not in my first book, I Will Go On.  I will discuss the emergency in January 2020 and the lifesaving measures taken to bring me back from near death.  I describe what it was like to be under heavy sedation nearly a week and my family wondering if I would be back with my ability to move and communicate.  Also, the process of transitioning to a tracheostomy and feeding tube are thoroughly covered and there are details few of you would know that I share.

Problems with the diagnostic process of a rare neurodegenerative disease are also a topic I cover.  The decision to have brain surgery and the resulting success are explained.

I think this book has the potential to be a benefit to patients, caregivers and all people contending with challenges that seem too big for one human being.  Faith and hope are the keys to finding your way through such trials.

I hope you are as excited as I am to see this in print in the coming months.  I expect a completion date to be announced for some time in August.  There will be paperback, hardback and e-book versions available on many book outlets including Amazon books. Thank you, again, for keep up with our blog.  -- Dan

Nearing Completion of My Next Book --- FARTHER ON

Karrie and I are faithfully being safe, hoping for an end to COVID 19.

My friends and readers, 

The new book is getting near completion.  It won't be too long, page number wise.  But it feels right at just over 125 pages.  I have written about the ensuing years since the publication of the first, I WILL GO ON.  It was a chance for me to reflect on some of the changes that have taken place, such as the DBS surgery and the tracheostomy experience.  Also, I have had an opportunity to consider how I have truly lived on longer than would have been anticipated with a parkinsonian-plus condition such as mine.  I am excited to share it with all of you and I hope to be able to encourage others who are going through similar brain diseases or experiences with a tracheostomy or feeding tube.  I feel my little book will be an inspiration to others who are not seriously ill, as well.  It is a chance to share my personal insights that occurred to me during my near death experience and what I have struggled with subsequently.  Finally, the things these difficulties have helped me to gain are priceless and worth trying to put into words.

Karrie is going through my rough draft now, helping to edit and looking with what I hope is a critical eye for ways to improve my grammar and punctuation in the document I have been writing for most of a year on my MacBook.  I want her input on the content too, as my favorite editor.  She is excellent at this task!

Well, it is time to move on for today, so I just wanted to get that out there.  The book is coming this spring or summer, and I hope that you will help me spread the word.  It will likely be on Amazon by that time. 

Thanks for all you support and interest,  Dan

Replacing Trach with Cuffed Version

I am being scheduled to have my smooth trach tube replaced in mid March with a cuffed version.  This will allow me to be able to have a ventilator at night while I am sleeping. As a result of my brain degeneration, my diaphragm is not fully functional and has reduced my lung capacity.  This is progressive so the ventilator will ensure that when my body is slowed down during sleep that I continue to receive enough oxygen.  It has an inflatable ring inside my windpipe that will seal the trach so that I get a tight fit and 100% positive airflow.  That will mean I will have no speech during the night.  Karrie can deflate it for me in the morning so that I may speak.  Thanks for your prayers. If anyone has experience with this trach type, please write to encourage me in this process.  Thank you friends! 

Singing with A Passy Muir Valve

I have been working at playing music after my trach operation. Generally, I try to stick with just instrumental material because of the coughing that it causes.  Occasionally, I will be recording a vocal, such as this song I am posting today.  I am using the Passy Muir speaking valve.  This allows air in, but prevents it from exhaling thus pushing the air up through my vocal chords to produce sound.  These valves cannot be used with a cuffed trach, which is the type I had when I first had surgery.  Speaking with the cuff inflated made me silent and my family couldn’t hear me.  Once I had an uncuffed trach, I was able to speak and sing with the Passy Muir valve.  I hope you enjoy my song, written in 1974 but recorded this morning!  — Dan

 https://youtu.be/nwpbzffcGY0

Starting Book Number Two

It is time.  I have more stories to share and want to put them in a book.  Some interesting and painful things occurred in going to two physicians 10 years ago. I will write about them using fictitious names to avoid harming anyone, but rather to delineate the difficulty of being treated for a rare brain disease such  as I have. These did not include the specialists and Doctors I was diagnosed by originally or those I have today. Hard to believe the specialists I will write about were so clueless about how to respond to a patient in my situation.  These two are not from RMC or Loma Linda and I have spoken little publicly about their treatment of Karrie and I when we sought second and third opinions.

Also, much has occurred since I WILL GO ON was written and published in 2009.  I have had brain surgery with an extraordinary neurosurgeon, and a great new neurologist/movement disorder specialist at Loma Linda University.  Most importantly, to write about how early this year (2020) I nearly died in the emergency room and was saved by the quick thinking of my wife, Karrie, and wonderful doctors and medical staff at Parkview Community Hospital.  My experiences during my time in the hospital, and subsequently in the rehabilitation facility for 6 weeks,  followed by the time of adjusting to a new normal at home as Karrie and I adapted to the tracheostomy and PEG tube feeding are stories crying out to be written. 

“Farther On” is chosen grammatically speaking because “further” speaks of literal distance and “Farther” of metaphoric progress along a continuum.  Farther On is the sequel to I Will Go On: Living with a Movement Disorder, and I hope to complete and publish it early in 2021.  

More news about my writing progress to come.  Thanks for reading.  I will end with a relevant, and one of several favorite Scripture references. -- Dan

Philippians 3:13-14 "Forgetting what is behind and straining toward what is ahead,  I press on toward the goal to win the prize for which God has called me heavenward in Jesus Christ."